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good information

Posted , 4 users are following.

loxie
loxie

I've found some good information and a really useful 'overview' whilst searching online for something that I could use to give to friends/relatives to explain what fibro is and how it affects me.  It's from an american based site but other than the drug names being different, it's very relevant no matter where you're located.  It's clear and concise and has given me some real hope, plus it's something I can print off or email to people I know to better explain what I'm coping with.  I cant put a link on here, it will be deleted by the moderators but if you go to myalgia dot com then forward slash overviewB dot htm you should find it.  

http://www.myalgia.com/overviewB.htm

Emis Moderator comment: I have added the direct link and deleted the other post with the article copied/pasted as this may breach copyright. You can put links in posts, they will only be deleted if they breach the site rules.

2 likes, 16 replies

16 Replies

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  • kaz_40
    kaz_40 loxie

    Posted

    Hi Loxie Thank you for the link I will take a look on it. hope you have a good week and arnt in too much pain take care gentle hugsmile
    • loxie
      loxie kaz_40

      Posted

      was doing a bit better tail end of last week but did a clear out of all my junk and took it to a car boot sale yesterday.  I'm in total agony today, obviously tried to do too much without realising.  Neck and shoulders are particularly bad which came on last night and I woke up with it still hurting this morning.  Didnt lift or carry anything heavy but guess just used up too much energy reserves during the day without a rest.  Very difficult to know what is 'too much' yet, I guess I'll have to learn from experience.
    • kaz_40
      kaz_40 loxie

      Posted

      I would rest up today hun, If I polish today and am able to hoover thats all that gets done. washing tomorrow clean bathroom following day, I try to work things like that. but it depends on how Im feeling and what pain Im in.I find if I go out that in itself is enough. I couldnt do anything else that day. I find going out in the car very tiring it seems to zap me of all energy it is a case of we are learning all the time with fibro what we can do and we cant do. take care gentle hug
  • Boqer
    Boqer loxie

    Posted

    Hi Loxie, thank you for the link, it was interesting reading too, they seems to understand the condition. I have read things before which have been quite upsetting, putting that fibromyalgia is a product of our imagination.
  • kaz_40
    kaz_40 loxie

    Posted

    Hi loxie It has made for very interesting reading and was quite informative, The Americans seem to have a better understanding of it than the UK does. fibromyalgia isnt widely known in the Uk. Ive found if Ive mentioned it to people they just look at me blankly. It needs putting out more in the UK. take care gentle hugsmile
    • Boqer
      Boqer kaz_40

      Posted

      Morning Kaz, I agree with you, but there seem to be a lot of people who have fibro, I was diagnosed quite quickly (although the Dr wanted me to have more blood tests last week rolleyes ) and found out that a lady I know who lives down the road has it too, though most people just comment on how well I look, which isn't helpful! And I agree Loxie, it's difficult to pace yourself and know your limitations, I'm always getting it wrong, but I suppose in time I will learn. Hugs to everyone.
    • kaz_40
      kaz_40 Boqer

      Posted

      afternoon Boger How are you? I had a friend come to see me on sat she has no understanding of fibro at all and isnt interested in my condition, all she said was you look well, as I was sitting their in sheer agony earache in both ears bad head pain in every place of my body imaginable.learning to pace ourselves is 1 of the hardest things to learn is to pace ourselves. Im like you I push push myself unil I end up in bed for 3 to 5 days. it is difficult to pace yourself especially when youve always been on the go and working.we will learn in time to pace ourselves everything takes time. fibro is a learning curve for us all. take care gentle hugs hope you have a good week and less painsmile
    • Boqer
      Boqer kaz_40

      Posted

      Thank you kaz, how are your ears?

      I'm just trying to relax today, recovering from yesterday *rolls eyes* yes, pacing is extremely difficult, I mean you have to do something at some point regardless of how you feel, it's rough, I get a lot of hip and foot pain which just doesn't go away and makes anything difficult.

      Yes, I commiserate with you about your friend. I saw a neighbour a couple of weeks ago, on top of everything I had a bad sinus infection, and all she could say was how well I looked. There was no point in me saying anything cos like you say people aren't interested anyway, but you would think that just occasionally you would come across someone who is rolleyes

      Anyway, I hope you have a reasonable week too :D

    • Boqer
      Boqer

      Posted

      P.S. it's Boqer, not Boger lol
    • kaz_40
      kaz_40 Boqer

      Posted

      sorry hun my eye sight not good really sorry about that x
    • kaz_40
      kaz_40 Boqer

      Posted

      Hi Boqer ears are fine now thankgoodness I had it in both ears on sat, but today its fone so thats a relief. Im  never free from back pain leg pain and pain in hands fingers but just get on with it and get through the pain as best I can thats all any of us can do. the only people that understand fibro is those that have it. no 1 else seems to care and cant be bothered to learn about it thank goodness for this forum at least we are all in the same boat gentle hug 
    • Boqer
      Boqer kaz_40

      Posted

      I'm glad to hear that your ears are better.

      I also get finger/hand stiffness and pain but it's only just come on in the last few months. I really think it's important for us to encourage ourselves, no one knows better than ourselves how much we go through, and when we get through a rough time or manage to do something in the day we should congratulate ourselves for it. It sounds weird I know, but I think it's good to encourage yourself.

      Take it easy and enjoy your day.

      Gentle hugs

    • kaz_40
      kaz_40 Boqer

      Posted

      we know our bodies better than any 1 our strengths and weakness. As you say I think we should encourage ourselves and praise ourselves for getting through an other day and by managing to do something that day how ever little and unimportant it may be. I agree with you it is good to encourage ourselves and each other on the forum you take it easy to and hope your having a good day gentle hugs
  • loxie
    loxie

    Posted

    Thanks to the moderator for including the link.  

    I thought I'd share this as it was clear and easily understood and not too emotive.  Neither my partner nor any of my friends really understand what fibromyalgia can mean and because there's no real visible signs they don't understand when I'm in pain or fatigued that it isn't just the odd ache or two or because I didnt take a nap etc.  Not their fault, I didnt have a clue what this condition was before I developed it and even I don't understand the limitations sometimes either.  

    • kaz_40
      kaz_40 loxie

      Posted

      I think its hard for all of us to understand fibro especially with the different symptoms i throws at us. I think what Im finding hard is I have no control on whats happening to me. If you have the flu or a cold etc you take flu cold rememdies and get better but with fibro it doesnt matter what you do or what you take it you dont get better and that I think personally speaking for me is the hardest thing to except. all we can do is take a dayat a time and get thru each day as best we can hopefully 1 day a cure may happen gentle hug
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